[adamsp41Participant]

Hellos Avril…I had my SCT in Jan2011 and suffered badly with mucositis( worst part of the whole treatment) and I tried everything to ease the problem …mouthwashes …ice lollys…gargles…toothpaste…cold yoghurts…etc etc etc…to no avail…but my eldest daughter came in one day and asked if I have tried using cool coca-cola as a mouthwash….well it worked.. to be blunt it acted like a decoke of my mouth/throat/gullet and gave me almost immediate relief…at least I could talk…I know it sounds strange but any relief from the problems associated with SCT are more than welcome and this one worked for me…hope SCT No2 goes well and best wishes for a speedy recovery..Phil

[adamsp41Participant]

So sorry to hear such sad news…our thoughts are with you…Phil and Jan

[adamsp41Participant]

Good luck to Ian on his post SCT recovery…hope there are more ups than downs…Phil

[adamsp41Participant]

Hi Andy…fantastic news to start 2015 with…keep up with the hand gel to reduce chance of infection in public places ( I remember going through gallons of it ) and keep on the good work getting the PP’s down to a big fat 0…well done…Phil

[adamsp41Participant]

Hi Susie..I too suffer from cramps especially in my rib areas ( on the site of old lesions caused by MM ) and was also given Quinine tablets and I must say ” touching wood ” they seem to have done the job…good luck in your decision making…Phil

[adamsp41Participant]

Signed… good luck

[adamsp41Participant]

Hi Andy…well done and here’s to more anniversaries…Phil

[adamsp41Participant]

Hi Robert…I have been an mm patient since 2009…Had an SCT in 2011 and am still in remission…I have just taken out insurance for a weeks holiday in Lanzarote for myself wife and son aged 17…when you fill the request form in on a comparison website you will be guided through as to the extent and problems incurred during your illness…the price comes out at the end…obviously it’s worth shopping around to find a suitable company…We used Getgoing travel insurance Tonbrige ,Kent and cost us £49.26…good luck and enjoy your jollies…Phil

[adamsp41Participant]

Hi Tom…so sorry to read your sad news…but I am sure you will keep as positive as ever…and give it another damn good go with whatever the consultants decide upon and get another 4 years out of the next batch of treatment…stay safe…Phil

[adamsp41Participant]

Hi all…Jan and I would like to send our condolences and thoughts to all family and friends…always a source of info and advice on here…stay safe…Phil

[adamsp41Participant]

Hi Sarah…I was on x1 trial with Revlimid post SCT (Jan 2011)…started on 25mg and gradually over the years finished up on 5 mg…and as Tom states it does affect everyone differently…I had tiredness as my main side effect …(certainly bearable)…Docs took me off Revlimid as it was causing problems to my liver…still get fatigued but nowhere as bad…hope your mum gets remission and good luck to you all….Phil

[adamsp41Participant]

Hi Neil…briefly I had my SCT in Jan 2011 and was randomised for X1 trial…but …gradually the Revlimid took its toll and from starting at 25mg per day I ended up on 5mg daily…my liver could not cope and have been taken off Revlimid whist remaining on the trial …but to answer your question..I always felt "ok" whilst on the trial…but since coming off (18 weeks now) my wife says I am a different man..I am not as lethargic or tired as before,I must say I have not noticed this but "looking in as my wife does " opened a different view on the matter. I am more confident with going on holiday and socialising, due to my bloods improving significantly …the problem with this disease is that everyone has different feelings and reactions to this bag of poo-poo we have to cope with…hope you find your happy medium and things pan out for you both as well as possible…stay safe..Phil

[adamsp41Participant]

Hello Rebecca…I too had my SCT done at St James's in Jan 2011…and as far as we can remember I had 5 days of GCSF injections then onto have my harvest collected the day following completion of GCSF…I too was told to prepare for harvest between 1-3 days depending upon the collection rate…mine took 3 days…if you have any queries the clinic at St James's has a new CNS (Clinical Nurse Specialist)who will be able to put your concerns to rest…I have been attending St James's for approx 5 years and can only praise the whole team…when you say disillusioned is that with your hospital or Leeds ?…stay safe…Phil

[adamsp41Participant]

Hi Vicki and Colin…."S" it is then…just as long as you have no troubles on your socialising/break/rest/recess/leave/celebration….Hmmmm I could use these for my future "V" or "S" 😀 ….enjoy the time…stay safe…Phil

Hi Tony…glad it raised a smile…enjoy Majorca…plenty of factor 50…Phil

[adamsp41Participant]

Hi Scott…worst part over with now just take it easy and let your body tell you what you can and can't do…really good news you are doing well…good luck in remission…stay safe …Phil

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